Since Parker Finn was diagnosed with juvenile nasopharyngeal angiofibroma in November 2023, there have been many highs and lows in his battle against the condition.
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At the end of last year, Parker, 9, had an appointment with an ENT to have his tonsils removed, but during checks his specialist found a lump up his nose.
Following weeks of going back and forth to Melbourne for MRIs, scans, biopsies and appointments, his family was told he had a non-cancerous condition called juvenile nasopharyngeal angiofibroma.
JNA is a very rare benign tumour, affecting only one in 150,000 people. It accounts for just 0.5 per cent of all head and neck tumours and grows behind the nose.
It usually impacts young men between 10 to 18 as it is thought to be a hormone-related condition. Parker was just two days off his ninth birthday when he was diagnosed at The Royal Children’s Hospital in Melbourne.
“We were told ‘surgery is the only option’,” Parker’s mum Jess Finn said.
“But (they) can’t do it.
“There are two surgeons in the state who are capable of taking his case and they don’t work out of this hospital.
“So that was terrifying, having The Royal Children’s Hospital tell you ‘we can’t help you’.”
Parker was booked in for two surgeries in December with otolaryngologist Brent Uren at Monash Children’s Hospital.
The first, which put 47 coils in the blood vessels surrounding the tumour to stop it bleeding, was successful.
The second surgery, to remove the tumour itself, did not go as planned.
“They told us not to sit at the hospital as it was going to be a 10-hour surgery,” Ms Finn said.
“Myself, Parker’s dad Nathan and my partner Simon went to Chadstone ... and around three hours after the surgery began, the specialist rang me and it was probably the worst phone call of my life.
“When he rang he started with ‘Parker’s lost too much blood’, so in my mind I thought Parker had died.
“He told me Parker had lost eight litres of blood and they needed to call off the surgery.”
When they arrived back at the hospital, Parker was in ICU.
“Brent came and saw us. I thought he was going to tell us Parker was going to die,” Ms Finn said.
“They told us that surgery is the only option, they’ve just done it and it has not worked.
“He told us ‘it’s fine, we’ll try again, circle back and find a new plan’.”
Parker and his family spent two weeks, including Christmas, at Ronald McDonald House in case any complications meant he needed to go back to hospital.
Once he was home, Parker was on high activity restrictions. He could not run, swim, jump or play sports during his summer holidays.
In February, he returned to Monash Children’s Hospital for a second attempt at removing the tumour.
During his first surgery, they injected glue into the tumour to block the blood from coming out.
The next day, Parker went in for his second surgery, where he again lost eight litres of blood. Doctors were able to remove 20 per cent of the tumour, but they could not continue due to the rapid loss of blood.
“We went back to the hospital to see Brent and he looked as devastated as we felt,” Ms Finn said.
“He’s dealt with 20-plus surgeries and this was the first time he’d not been able to remove it in a surgery, let alone two.
“We were told ‘surgery was no longer an option’, which was very scary as we’d consistently been told surgery was the only option.
“It’s really hard when the doctors don’t know what to do. Everything we try now is experimental.”
The tumours often resolve themselves in the patient’s 20s as hormones balance out and Parker is not in pain, but the tumour cannot be left alone in its state.
Parker’s nose is completely blocked and the tumour has pushed out his cheek and eye, is wrapped around his optic nerve and is pushing into his brain. It is growing at a rapid rate, too.
His family has been to the Peter MacCallum Cancer Centre to see if radiation is an option, although that is a last resort.
Parker is also part of a Zero Childhood Cancer clinical trial and an ENT specialist in Brisbane may be able to try surgery again, which is the ideal option.
“We’re heading to Brisbane on Monday (April 29) and they will do some scans and let us know what their thoughts are,” Ms Finn said.
For Parker’s family, one of the hardest parts has been supporting his siblings and trying to keep a sense of normality for them.
“(Parker’s older brother) Hunter and Parker are shared between me and their dad, Nathan, and Simon and I have Hazel, who’s two,” Ms Finn said.
“Whenever we go to Melbourne we have to leave Hunter and Hazel behind. They still come and visit, but it’s very hard leaving them behind.
“It’s the same for Nathan. His partner Karla had Lottie in December, just four days after we got back from Parker being diagnosed.
“So they have a newborn that they either need to cart around to hospital, or leave her behind, and it’s so hard to leave a newborn behind.
“We can and will do whatever we need to for Parker, but the effects of having to do that bleed into everyone else.”
Parker’s parents are grateful to have flexible workplaces and employers who understand they may need to take time off to support him.
“I work at Intersport and the owners, Flip and Wally, are just incredible,” Ms Finn said.
“Nathan’s boss is the same. We’re both very lucky that we’ve got understanding employers.”
They have found the entire community to be supportive of Parker and his family.
“The boys go to St Mary’s and the principal sent us a message on the day of Parker’s first surgery, just reaching out,” Ms Finn said.
“His teachers have been phenomenal in checking in, seeing what he needs, what he can do.
“Someone we don’t even know reached out to Echuca Football Club and told them what was going on. They already started co-ordinating ways for Parker to be involved in football even if he couldn’t play.
“People that we don’t know are putting wheels in motion to make sure life can still happen for him.”
Lockington Netball Club, where Ms Finn, Hunter and Parker play, hosted a few fundraisers for the family.
Mr Finn works at American Hotel and Essen Food and Wine, and his colleague Harry Ripon created a GoFundMe to bring attention to Parker’s condition and give the community a chance to help.
Tara’s Hall Hotel is also running Team Parker raffles every Friday night, providing a good opportunity for Parker to spend time with the people closest to him.
Team Parker was created initially to do something fun for his immediate family with custom apparel designed by Parker.
After gaining more interest, the Team Parker Facebook page was created.
“On the Facebook page, I update all the information — where he’s at, what’s going on in his life,” Ms Finn said.
“People can buy the apparel and it’s a way to financially help.
“We’ve been asking people to send us photos of them wearing it so we can make a photo album and show Parker the amount of people who reached out and supported him.”
Worklocker Echuca makes custom hoodies, t-shirts and training shirts for Team Parker and more than 150 items have been ordered.
The back of the apparel says #JNAawareness so people can be aware of Parker’s condition and learn what it is.
JNA is very rare and can be hard to diagnose, with vague symptoms like a blocked nose or nose bleeds often being the only indicators.
Ms Finn wants parents to be aware of the condition, not ignoring signs like a persistent blocked nose.
The family is positive about Parker’s future and feels supported by his medical team.
“We’re hopeful that they’ll be able to do surgery in Brisbane,” Ms Finn said.
“We should have the results back from Parker’s Zero II trial (soon) ... it is amazing what they do.”
They are hopeful that the research into Parker’s condition will help other families who deal with JNA in the future.
“For us, that would be an ideal outcome; that we can help other people down the track,” Ms Finn said.
Fundraiser for Nathan Finn by Harry Ripon: Parker Finn's Tumor Battle (gofundme.com)
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